Tag Archives: shame

At the conference Em and I just returned from I was confronted by someone who told me I was being disrespectful of my daughter. She actually went further and said I had spoken “inappropriately” to her. Furthermore she said these things to me in front of a room filled with people, all of whom could hear her, because she was leading the presentation. Yup. It was one of those moments when you really wish the floor would arbitrarily open up and allow you to slide into its blissful dark, abyss. It was also the final day of the conference and I was feeling pretty fragile and emotional. My ability to filter was at an all time low, my ability to think logically was pretty much non-existent, and finally, my ability to hear her and reflect on her words without defensiveness was hovering in the red-high-alert-grab-your-oxygen-mask-we’re-going-down-save-yourself range. It was one of those moments you wish had never happened, but more to the point you wish you’d never said the thing that was being criticized so publicly. It was a moment of intense shame. And my first thought was – defend, defend, defend!

But remember, I was in overwhelm before her words had found their target and I didn’t feel strong or able to fight back, nor did I feel I was in a position to fight back, after all not only was she leading the workshop, she was someone I have a massive amount of respect and admiration for. This is someone I had looked forward to seeing ever since I was told we would be in her workshop. This was the person I’d read about and anticipated meeting with eager excitement. Meanwhile there my daughter was, typing out “I’m happy.” To which she said, “I’m guessing you’re happy when your mom gets called out on her behavior.” Ouch. Ouch. Ouch. Let’s just get a knife while we’re at it and see some real blood.

But here’s the thing… she had a point. The details aren’t relevant, what is, though, is that if I am speaking to my Autistic child in a way that I wouldn’t speak to my non autistic child, then that’s clearly a problem. If I am speaking to my Autistic child in a way that I would speak to my non autistic child, (as was the case in this instance) and someone who has spent their life working with children and advocating for them calls me out on what I’ve just said, I need to, at the very least, consider their words and reflect on my own. I have never claimed to be an ideal parent. Years of parenting has taught me that sometimes I get it right, often I get it wrong, but hopefully I will always be willing to look honestly at my actions and behavior without defensiveness, but with a desire to learn and be the best parent I can be one day at a time.

So if someone says something that really hurts, when their words pierce, I’m old enough and smart enough to spend some time thinking about my reaction and at least try to see where the other person is coming from. Sometimes people say things without the necessary information, sometimes people say things that hurt because they are operating from a set of false assumptions, and sometimes hurtful things are hurtful because there is truth to their words. I’ve spent the last 36 hours trying to figure out which of these was true or if it was a combination of things, but more importantly, I have reflected on whether the sentence I said to my child was the best way I could have spoken to her and if it wasn’t, what would have been.

Even in my state of overwhelm, I was able to whisper to Em right away, “I’m so sorry, Emmy.” And I was. But I was also angry with this other person. I still felt the need to defend. I still wanted to “save face” in front of this room filled with people. But instead I went silent and tried not to cry. Shame. Shame is brutal and though all of us have probably felt first hand what it feels like, we also probably, inadvertently have shamed others without realizing it or even meaning to. I know I have. The above example is a case in point. Without meaning to – I had shamed my daughter by questioning out loud what she’d just typed. I get that. I have enough humility to know that I make tons of mistakes… every day… but I also know the beat up job that is my default reaction to making a mistake is not a healthy one. I’m working toward more measured and thoughtful responses.

One of the things I love about Pascal Cheng, the first person to help me begin supporting Emma with her typing was that when I did something that he saw was unhelpful, he would/will say, “May I give you some feedback?” He then says things like, “Instead of saying, ‘No!’ ask her if that’s the word she meant to type.” He has taught me to try and give her just the right amount of resistance (to make sure that she doesn’t go to favorite scripts) combined with the emotional support and encouragement she needs to continue typing with me. Pascal models the same respectful interaction with everyone he comes into contact with. When I grow up I want to be like Pascal.

But in the meantime, I am looking at my words and seeing how important it is for me to be aware and conscious and respectful of my daughter. Perhaps the better question I must remember to ask myself is not – would I speak to my son this way, but, would I want someone else to speak to me this way? The beauty of life is that we can always improve if we want to. And I desperately want to. My goal isn’t to be “right” or never to do anything “wrong” or to make someone else “wrong” when they confront me, my goal is to have the willingness to look honestly at my behavior and the things I say and do, face my mistakes and learn from them. That’s my goal for this short life I have been given.

“Are you the adult you want your child to grow up to be?” ~ Brené Brown from her book Daring Greatly.

Are we being honest here?

Because if we’re being honest, then – no, no I’m not.

I could hit the publish button right now and call this a post, but I’ve got a couple of things to add here.

From Daring Greatly – “…we should strive to raise children who:

Engage with the world from a place of worthiness

Embrace their vulnerabilities and imperfections

Feel a deep sense of love and compassion for themselves and others

Value hard work, perseverance, and respect

Carry a sense of authenticity and belonging with them, rather than searching for it in external places

Have the courage to be imperfect, vulnerable, and creative

Don’t fear feeling ashamed or unlovable if they are different or if they are struggling

Move through our rapidly changing world with courage and a resilient spirit

Now read every one of these things as a directive for yourself, like this: Embrace your vulnerabilities and imperfections. Feel a deep sense of love and compassion for yourself and others. Carry a sense of authenticity and belonging with you, rather than searching for it in external places. Don’t fear feeling ashamed or unlovable if you are different or if you are struggling.

I am becoming increasingly aware of how often my critical responses to my children are often reflections of my deepest insecurities. I don’t want them to make the same mistakes I’ve made. I think I can control their future by making sure they understand just how serious all of this is. I admonish my son for forgetting to feed the cat, while remembering the time my parents left me in charge when I was fifteen, two years older than my son is now, and how I forgot to feed the horses and had nightmares for years afterward. I try to remember to phrase my sentences as – You forgot to feed the cat, what might help you remember? Instead of my knee jerk response of “Did you forget to feed the cat again? Why can’t you ever remember to do that?” Because, wow, there’s a world of difference between the two… and yes, I’ve said both. The first is when I’m being the adult I want my children to grow up to be and the second is the adult I hope beyond measure they never become.

I worry about what a neighbor is thinking when he asks how we are and my daughter responds with, “Yeah, baby Teddy can’t go on the pogo stick. Baby Teddy might fall and hurt his head. Baby Teddy will cry and have to go to hospital…” and then describes how the doctors are going to have to put a breathing mask on baby Teddy. I stand there feeling increasingly uncomfortable, because I care what our friendly neighbor thinks or because I’m afraid of what this might say about me and the things we put her through years ago? And even as I am writing this, I marvel at how she really was answering his question, far more honestly than I ever would dare.

The truth is my children are closer to the adult I’d like to be, but am not yet. I figure since my husband is hard at work figuring out the whole anti-aging thing, I’ve got at least as many decades ahead of me as I’ve got behind me to work on this goal. I’m grateful for that, really. I’m going to need every year I’ve got left.

“Have the courage to be imperfect, vulnerable, and creative”

Yup, check.

“Move through our rapidly changing world with courage and a resilient spirit”

It’s a little ironic that this blog began as a document of my daughter’s “progress” (which, at the time I defined as – becoming indistinguishable from her non autistic peers) and has evolved into a document of my progress and movement away from exactly that kind of thinking. I don’t really have a problem admitting the mistakes I’ve made, which is probably a very good thing as I am not going to get to a point where I never make any. But I do my best to learn from them. I try hard not to beat myself up. Sometimes I’m more successful at that than other times, but that too is a lesson I learn from. I didn’t get to any of this on my own. The progress I’ve made regarding autism, how I think about my daughter and because of that thinking, how I interact with her, is a result of the help I’ve been given. Help given to me by those who are Autistic.

I would be dishonest if I didn’t admit to times I’ve felt confused, afraid, unsure of myself, and incredibly vulnerable more often than I’d like, but that’s progress too. There was a time in my twenties and early thirties when I did pretty much anything not to admit I ever needed help, let alone asked for it. Thankfully I’ve progressed. So last night when Richard told me about running into one of Emma’s early intervention therapists and how it seemed she was surprised that Emma was not able to carry on a conversation with her, I felt a wave of something I couldn’t immediately identify. First I cycled through thoughts of “I don’t want to hear your feelings on this,” to “I wish you hadn’t told me about this” to the overwhelming urge to stick my fingers in my ears and yell, “LALALALALALALALA I CAN’T HEAR YOU LALALALALALALALA!!!”

Yeah. I know. That would have been childish of me. And by the way, I’m 52 years old. You have no idea how much I wanted to do that. *Shrugs, then smiles.

Progress…

So after all that, after we got into a fight about something unrelated that I can no longer even remember what the topic was, I realized what I was feeling. I felt the weight and force of my feelings. Feelings I really prefer not to have or feel. Ever. Shame. Feelings of shame. Yup. Shame. Like a massive metal door closing in on me, I felt shame. And then I felt shame for feeling shame. Fade to black.

Because that’s how this works right? We feel something and then instead of being able to sit with the feeling, work through it, we add to it by feeling shame for feeling the initial feeling of shame. Who came up with this stuff? If it wasn’t so damn painful it would be beautiful in its perfection! As a friend of mine and I like to say, it’s a “pick your poison” situation. Whichever way you go, it’s going to hurt. So yeah, I chose to feel the initial shame and tried hard to be aware of my judgment and that really loud, obnoxious, critical voice that loves to shout at me given the slightest opportunity. “Shame. Feeling shame. Lots of shame,” I said. Meanwhile Richard had moved on to the New York Times Crossword puzzle and looked at me with confusion.

To be clear – This isn’t about my kid. This has nothing to do with her, who she is, her neurology, what she did or didn’t say. This has nothing to do with Richard running into one of her Early Intervention therapists or perceived expectations, either mine, his or the therapist’s. This isn’t about autism. This isn’t even about parenting. This is about perfectionism. This is about my shame for being an imperfect human being. That’s what this is about.

“We all have shame. We all have good and bad, dark and light, inside of us. But if we don’t come to terms with our shame, our struggles, we start believing that there’s something wrong with us – that we’re bad, flawed, not good enough – and even worse, we start acting on those beliefs. If we want to be fully engaged, to be connected, we have to be vulnerable. In order to be vulnerable, we need to develop resilience to shame.” ~ Daring Greatly by Brené Brown

I’ve written about shame before. A couple of commenters on my last post about shame told me to watch Brené Brown’s TED talks on vulnerability and shame, which I did. B. Brown also has several books, Daring Greatly, is the one I’m currently reading, where she writes, “A sense of worthiness inspires us to be vulnerable, share openly, and persevere. Shame keeps us small, resentful, and afraid.”

Shame is something I am intimate with. I don’t know many addicts who aren’t. I’ve written about addiction and specifically having an eating disorder ‘here‘, ‘here‘ and ‘here‘. The self-betrayal implicit in addictive behavior exacerbates the pre-existing shame, creating depression and self-loathing. Attempts to alleviate those feelings with addictive behavior only fuels them. Shame heaped upon more shame is not a recipe for happiness or success. Ignoring shame, trying to bury it, and trying harder to not feel it, doesn’t work either.

There have been a number of studies suggesting a link between addictive behavior and autism. I don’t find this surprising given how feelings of alienation, isolation and fractured self-worth all contribute to wanting to seek refuge and escape. Except the thing we are trying to escape from is often ourselves. Many of us have internalized our shame, particularly those of us who tend toward perfectionism. Add to this obsessive tendencies, a desire to be loved, wanting to fit in, believing we are “less than” and addiction can feel like a perfect fit and the only way we can survive in a hostile, unaccepting world.

Oddly, we, as a society, tend to attribute laziness and a lack of will power as the reason people eat too much, drink too much or spend more money than they make. Similarly, people seem to think autism is a choice or at least the behaviors associated with autism are. These people apparently believe Autistic people can “lose” their “autism” if they can just be trained to hide their “problem” behaviors or the things they do that make them obviously Autistic. Many Autistic people talk about being scolded and punished when they were unable to produce the results expected of them when told they needed to “try harder.” Trying harder will usually make the person feel more terrible about themselves.

I worry about a culture that is conditioned to believe we must ‘train’ our Autistic children to behave in ways that most cannot, or cannot without a massive cost to their self-esteem. I worry about “autism treatments” and “therapies” whose underlying message is that our children are not okay. I worry about what our children are internalizing. I worry about addiction, depression, suicidal ideation, and how those things get set in motion at a very young age from feeling we are “bad,” not worthy and less than. I worry that because many do not understand autism is a neurological wiring, or do not take into account the experience so many Autistic people are describing, we are raising fearful children, filled with shame for who they are as human beings. Instead of helping our children flourish, encouraging them to be all they can be, we are trying to make them into something they cannot be.

I love this photo of Emma because it captures her in all her Emma-ness!

Shame has a long and twisted history. Over the centuries it has been used to coerce, to convert, to make people compliant, to keep people in line. I’m not sure there is a “healthy” aspect to feeling shame, though I may be in the minority here as this article states, “Embarrassment and shame are important in the regulation of social behavior. Both emotions tend to occur when rules have been violated.” But what if those “rules” are not actually in place for the good of ALL? What if those societal “rules” serve the majority, but actually are a disservice to a minority?

The argument that without shame we would all resort to violent, unethical and amoral behavior is one I don’t agree with. Plenty of people behave badly who are filled with shame, often as a direct result of the burden of shame they live with, but usually those who feel tremendous shame hurt themselves more often. I question how often shame, actually motivates us to respond in positive and constructive ways. In most cases, it seems to me, shame is less a controller of bad behavior and more an instigator of self-betrayal and self harm.

Shame is what people feel who have been on the receiving end of violence, violations, betrayal and abuse. Numerous studies have linked shame with depression, suicidal ideation, post-traumatic stress, rape and incest. The very people who could actually use a little shame appear to be without, while those they victimize carry the vast portion of it. In these cases, shame is the emotional equivalent to metal restraints, intended to keep people in check, compliant and silent, particularly when used on children or a group of people who are already in the minority.

Many of the methods used, with supposedly great success, on Autistic children, has created a population of adults who feel tremendous shame, lack self-esteem, feel inferior, have anxiety, live with ongoing debilitating stress, all of which exacerbates the very “behaviors” these therapies attempted to remove. The unending destructive cycle shame creates, does nothing positive for anyone, least of all our children.

I believe shame keeps us from flourishing. It causes us to doubt, to become hyper aware, self-critical of our desires, our urges, our instincts. Shame makes us feel incapable, unable, frozen and of little value. From my perspective, shame is far more damaging than it is “healthy”. Shame is exactly what I do not want my children feeling. Ever. In fact, shame is a warning sign that something has been taught improperly. If either of my children exhibit shame about something, it is a signal that more needs to be discussed.

I do not want my children behaving in a certain way because they feel shame if they don’t. I want my children behaving in a kind and loving manner towards themselves and others because they have learned it feels good to do so, because they have come to see that self-seeking, hurting others, gossip, betrayal and acts motivated by resentment and vindictiveness lead to more harm and like-minded behavior. All behavior is infectious. All behaviors, good or bad can provoke others to do the same. I am not naïve enough to believe it’s a given, but I do know that I like myself far more when I am kind and being of service than when I’m not.

I hope my children are learning the antithesis of shame and silent compliance, which is a strong sense of self-worth. I want them to know now, while they are still so young, the beauty and joy of a healthy sense of self, that wonderful feeling of liking who they are as human beings, that feeling we are born with, but that over time can be taken from us. I want my children to be in touch with those wonderful feelings of curiosity, awe and joy, so that when they make mistakes they aren’t destroyed by them, overwhelmed with shame and become silent. I want to bolster them up, reassure them, encourage them, support them, so one day, they will be able to give hope and encouragement to someone else who may desperately need it.

I might be you. the terrific new book written by Barb Rentenbach and Lois Prislovsky, Ph.D awaited my arrival from our holiday travels. I am only on page 51, but wow(!) what a book! Barb is Autistic. She also happens to be non-speaking and needs support doing almost everything including communicating. Barb uses facilitated communication to type. In her own words she explains, “The deal is, I still can’t talk, but I can type on a keyboard or letter board if someone supports my wobbly hand. The process is called facilitated communication, or “assisted typing.” It is quite controversial, meaning lots of people think it is not really me doing the typing. This infuriates me…”

For those who are dubious about facilitated communication, Barb now types independently requiring just a hand placed gently on her back. In October of last year I went to a presentation given by Barb and Lois. It was riveting, mind-blowing and made me rethink everything I thought I knew, but realized I did not. Barb wears thick glasses and uses an oversized keyboard to type. She has a terrific sense of humor, is incredible honest on all topics including extremely personal ones; this book is a joy to read. She discusses self-injurious behavior, feces smearing, violent outbursts, which her school viewed as baffling and without provocation and yet in the telling, one realizes this was not the case.

Barb eloquently describes the brutality of other human beings who do nothing to temper their contempt for any who appear different. Barb writes, “Let me be brutally honest. Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.” Breathe. Read that again. “… Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.” “You.” Take a breath and let that in. “Children who grew up to be you.”

Confession: I am in second grade. There is a little girl named Louise who wants to be my friend. She has warts covering her hand, the hand that she has extended to me, the hand she wants me to hold, only I will not. I am the new kid. I am well aware of the unspoken rules of the playground. You do not hold Louise’s hand. You do not allow yourself to be seen with Louise. You distance yourself. You play alone if need be. To be seen with Louise is to be like Louise. Flawed, with warts for all to see. Instead I tell everyone I moved from a foreign land and spoke another language, a language only I and the village I have moved from speak. I lie about my family, I lie and say we lived in a field with a house made of straw. I told these lies because I thought they made me seem exotic and fascinating. I lied because, already at the age of seven I believed I was less than, not good enough, destined to be like Louise, with my hand outstretched to others, only to be rejected time and time again.

Barb writes about how she is unable to eat without making a mess, as hard as she tries, her hands do not do as her mind bids them. At lunch a student reports her messy attempts to eat her sandwich and is told by a teacher that she will have to eat somewhere else, away from the others as she is, “making the other children sick.” This book (and again I am only on page 51) made me stop and reflect on my own behavior. Am I really as empathic, compassionate and wonderfully kind as I would have everyone believe? Do I make assumptions? Do I hold beliefs about others because of the way they appear? What are my hidden prejudices? Am I able to admit to them? Who among us can say without hesitation that were our bodies not able to respond in the way our brain and intellect would have us, were we ridiculed and shunned as a result of that disconnect, that we would maintain our composure, would not act out in protest?